Category: Personal.

I haven’t been writing a lot. At least not this week. I’ve been exploring different creative and painless ways of filling my days. I’ve gone back to YouTube and it’s been fun for the past few days. Who knows how long I will be able to keep it up, but I’ve made a couple new videos that I’m proud of. I’m also a Tweeter, of sorts, and am on that Instagram thing. CandiceChetta is always my screen name because, you know, uniformity. Anyway. Little update.

It’s almost like living a nightmare, realizing that the rest of your life doesn’t look anything like you thought it would. Like you wanted it to look. More horrifying, not only does your life no longer resemble something familiar, you can’t even see what it looks like. You have no idea. All you know is it hurts every day from the moment you wake up to the moment you try to fall asleep.

The one fluid part of my diagnosis was the herniated discs — Doctors didn’t want to say that they had actually herniated because all they had to go off of was an X ray — which really didn’t tell them anything at all. The report indicated herniated, but the films didn’t, really. At least, that’s what I was told. That was my takeaway, from one spinal surgeon (Professor Doctor) and one DO (Director Doctor). No one wanted to say, “You don’t have herniated discs,” because the fact of the matter was they had no idea. “HAVE A NICE TIME IN PHYSICAL THERAPY!”

It’s not a fluid diagnosis any longer. It’s been utterly and horrifically confirmed through the MRI I had a week or so ago that I have two herniated discs, and impediment on my nerve causing me searing pain. I also have a cyst on the outside of my spine, and some kind of legion on the inside. I still don’t necessarily know what any of this means, as I read the report myself through my patient portal online. Tuesday is my appointment with a doctor who will tell me what my future looks like and what all of this means for me.

Having just been going to the PCP assigned to me at the time my insurance became active, I decided to follow the advice and recommendation of a friend and switch to the PCP at her office. She had had the similar experience of non or half diagnosis over the course of several years with little result, and said that this office was where she found doctors that would listen and take action. So I made the leap and I switched to an office much further from my apartment and made an appointment, X rays at the ready, to get my second opinion (since Professor Doctor hadn’t really given me… any opinion?)

I have no plans to abandon the original treatment plan. I do not want surgery, that would be shitty. But I wanted to make sure that I wasn’t going to hurt myself jumping straight into physical therapy without first making sure what exactly was wrong. I walked into the appointment with my new doctor still feeling completely confused about what my actual diagnosis was. The physical therapy referral from Professor Doctor, on the line labeled, “diagnosis”, had simply written “LBP” in large scrawl. I went in with the chief complaint of severe lower back pain and left with the diagnosis of… “lower back pain”? Great. Thanks for clearing that up.

A friend was kind enough to give me a ride to the new office since I’d never been to that part of town, and it is not what I would call an “easy” trip for a person in pain and in a back brace who needs a seat on the train. The office is underneath the Subway tracks, the walls are made of frosted windows, and there are chairs along those windows, facing the receptionists’ desk. This office, you can tell right away, is an osteopath’s office. An entire half of the office is dedicated to physical therapy suites, the other half, exam rooms.

I saw, let’s call her, Veronica, first. Veronica hung, rapt, but my every word. She seemed really concerned for my well being, and was receptive when I told her how much pain I was experiencing and how it manifested. She took pages of notes and showed me images of spines on her computer. She read the reports from my X rays and defined and illustrated for me what every single term meant. She told me what she thought my pain was and how she imagined it starting. She told me that I’d probably be given a stronger anti-inflammatory (currently I an prescribed Naproxen), and that she was sending me to the physical medicine specialist and that after I saw that person I would probably be seeing a chiropractor. All in that same day. I was later informed that Veronica could be slightly alarmist.

The physical medicine doctor, let’s call her Pam, asked me many of the same questions, looked over my X ray reports with me, and then pulled up the images through the Lenox Hill Radiology website. She shuffled back and through the images a few times muttering “ok…. ok…” to herself every once in a while. She excused herself and came back with the director of the office, whom we’ll call Director Doctor.

Director Doctor sat and looked at the images, immediately muttering to himself, “kyphosis.” And going over the rest of the images. He explained to me, and showed me, what a “normal” spine looks like and how mine, instead, is shaped like a C. He let me know that whatever it was that was causing me the pain I’ve been experienced, has only been aggravated and intensified by the presence of kyphosis and the scoliosis I was previously diagnosed with, and had confirmed at this appointment.

He said my disc height wasn’t worrisome enough to warrant an MRI at this point, and seconded the opinion that careful and daily physical therapy would do me some serious good, if the X rays were any indication of the state of the bones. He confirmed that he believes I have spinal arthritis.

Still, there is nothing structurally worrisome about the bones themselves. There is no sign of deterioration or breakage, or mineralization. All of my pain, it is hypothesized, is soft tissue related (also nerve related, when in an exacerbation).

Things I noticed:

No one wants to tell me that I don’t need surgery.

For every doctor, there is a diagnosis. Sometimes they overlap. Sometimes they add new parts.

Things I was told:

“This is something you’ll feel your entire life.”

“This will be with you forever. There’s no fixing it.”

“This is probably what makes everything else worse.”

“You will have a pronounced curve and probably be bent over when you are 60 or 70 years old.”

I started to believe these doctors as the 4 hour appointment came to and end. It was the first time I had looked at the X rays with a doctor. It was the first time someone actually pointed to the areas of an image that helped to translate exactly what was happening. I was physically examined by 3 doctors, thoroughly and with care. I spoke up, I asked the same questions over and over again of each of the three doctors, and I didn’t stop until I felt like I had covered all I possibly could.

So, you know, all in all, it wasn’t great news. But it was good to know that I had covered my bases and found a place where the doctors listened to and answered my questions. So, onto physical therapy it is.

I had an appointment this past week with a spinal surgeon. When I first got to the hospital, I tried to locate the building with much difficulty. I was told “your appointment is at 450 Clarkson.” 450 Clarkson, they had neglected to mention, was entirely obscured and blocked by a construction shed. I called the office from the street. “Do you see the Emergency Room? 470 Clarkson? You have to go in that entrance and take the elevator to the basement.” OK. So I did that.

Pretty standard initial experience. Filled out my initial appointment paperwork, handed over my X Rays and referral. Definitely felt like I was in a submarine, though, which was weird. It’s an old building, there is no central air in the basement. The lights look like portholes in the ceiling. The walls have metal seams and riveting. The rooms don’t have computers or windows. It’s probably hell in the summer.

The first doctor who came into my exam room told me he worked with the Dr. I was scheduled with, and that he would personally be reporting to him everything he learned and then both doctors would come into the room. (It’s a teaching hospital.) The first doctor was nice, personable, listened to me. Looked me in the eye. Gave me a physical exam. Spent maybe 10 minutes or so with me before he left to consult with the second doc.

Let’s call them Doc and Professor Doc.

Doc comes back in and starts to tell me that there doesn’t appear to be anything surgical at this moment when he is abruptly interrupted by Professor Doc who comes in to the room with his hand extended and his eyes on the wall and introduces himself to me. He’s audibly chewing gum. His black hair is slicked back, his stomach protrudes and he towers over me at at least 6′ 5″.

Doc said, “That’s the back brace they gave her,” indicating toward the object that Professor Doctor had picked up out of the chair, flopping it over in his hand a couple of times, scrutinizing it. “Ok, fine,” Professor Doctor said, before replacing it.

Professor Doc talks like he’s running an auction. He asks me many of the same questions that Doc has already asked me, in rapid fire succession. Never once making real eye contact. Smacking bright green gum the entire time. He makes me bend over, stand on my toes, walk on my heels. He makes me kick against his arms, pull against the pressure of his hands, and forces my straightened leg as far as it will go. “Good, she’s strong,” he tells Doc. I feel like a horse going for sale. Doc keeps reluctant eye contact when he can and tries to interject intermittently but is never really allowed to finish a sentence with Professor Doc in the room. Professor Doc, while he talks, says the phrase, “I’m a surgeon,” no less than three times, as if this statement is complete and meaningful in a way I should automatically comprehend.

Professor Doc says, “I don’t see anything surgical.”

He says, “This is a good thing.”

He says, “It looks like you just have a little back pain,” kind of squinting his eyes, curling his lip, and shrugging his shoulders. I felt like I was boring him.

I couldn’t find any words. I felt completely helpless. Did he miss the part where I can’t dress myself when my back is out? Did he miss the part where I can’t walk, bathe, eat, cough, sneeze, shower or fuck without worrying that my back is going to catch fire and make me contemplate the end? How about the fact that it takes me almost exactly 4 times longer to walk anywhere than it did only 8 or 9 months ago? And always with discomfort? Did he miss the part where I’m depressed, lonely and broke because I can’t work and I almost never leave my house?

Did he miss the part where two other doctors gave me an entirely different impression from reading those same X Rays and reports? Those doctors were the ones who told me to come here, I didn’t decide that myself. Why was he treating me like I was wasting his time and it was my fault? Every doctor I’ve seen from the Emergency Room to Urgent Care to the private DO told me with no uncertainty that I was “weak.” How could Professor Doctor take 3 minutes and decide that I’m “strong”? What do these words mean to these damn doctors at all, anyway?

“It looks like you have a little back pain.” A LITTLE BACK PAIN? I wanted to scream. I didn’t want to cry, I wasn’t going to do that, and I didn’t.

“Physical therapy.”

Professor Doctor, literally and figuratively washing his hands, reminded me that is was a “good thing” that he saw “nothing” before he left the room talking to Doc while not looking at him. Doc looked at me and said he’d be back with those referrals. 6-8 weeks of physical therapy, 3 times a week. After that, follow up with sports specialist for pain management. I sat and put my shoes back on, my scarf, adjusted my hat and held in my tears, waiting for Doc to come back.

“I don’t feel like he heard me at all,” I said to Doc when he came back into the room. I was about to burst. “This pain has ruinedmy life, and he said it was ‘just a little back pain'”

Doc desperately and kindly tried to reassure me that Professor Doctor has a certain style but is excellent at what he does. I rolled me eyes at him, not rudely, but exhaustedly and frustratedly, more than once with a heavy sigh. I just couldn’t believe that Professor Doctor heard me. Doc’s eyebrows were raised as he talked and I could tell he felt guilty that I had this experience, but I could tell he wanted me to believe that this is all the correct course of action and not to spend too much time worrying about it.

It’s not that I want surgery, I just want to know what’s happening with my spine and joints. I wanted them to look deeper and make sure I can safely exercise. Didn’t they understand I hadn’t felt safe doing anything for months, now? How can they possibly know that without so much as listening to me or granting me an MRI? This has been years of crippling pain and I was being told I wasn’t stretching properly? I just wanted to hear something and wasn’t told anything. I was given physical therapy, but I wasn’t told why or what that was supposed to do or how they knew that absolutely nothing else was wrong. This felt like the first medical treatment in an episode of House. You know, the one that almost always makes things exponentially worse for the patient? Yeah, it felt like that.

No one mentioned what I should do about being able to work, or even a diagnosis beyond “pain.” Two doctors found evidence of spinal arthritis and herniated disks. Two doctors were concerned about degenerative disk disease. It took Professor Doctor around 20 minutes to decide that I have the spinal equivalent to my period and that it would pass easily. A little back pain. Crestfallen, I stumbled into the waiting room to schedule my appointments.

They couldn’t even get me in until January for an evaluation with the physical therapist, and don’t schedule the sessions until after that happens, which probably means another 2-3 week delay in treatment. The woman at the desk also, somewhat foolishly, pre-booked my 6-8 week follow up with the pain management specialist, despite these delays in my physical therapy. I pointed this out to her, she told me not to worry about it. She gave me a supplemental list of PTs to reach out to if I wanted to see if anyone else could get me in sooner, but couldn’t tell me anything about Medicaid providers (why would they?), which of course are few and far between for things of this nature.

I have felt, for lack of a better word, paralyzed through this experience. I’m not sure if I should go back to my PCP and request someone else, or maybe try to get in again with the specialist and rip his face off. I don’t know if I should just believe these doctors and trust that it’s “just a little back pain” and try this physical therapy, give it a real shot, and hope, somehow, that bending, twisting and stretching is going to magically heal my spine and trick it into supporting me again. I mean, I can’t stand in one place for more than 5 minutes or I start to feel excruciating, debilitating, earth-shaking pain, but who cares. I couldn’t do the stretches the previous DO and MDs had prescribed me because they required so much standing and bending and every time resulted in more pain than they alleviated, even after weeks of attempting to stick to their prescribed schedule.

And what about just the reality of making these appointments work, in the real world? Money is tight, and MTA fares went up. $2.75, each way. 2 times a day, 3 times (or more with other appointments,) a week. 6 x $2.75 = $16.50 x 4 weeks = $66 a month. I don’t even have proper snow boots, at the moment, with which to get to these future appointments in this dangerous weather and I have to find 66 dollars a month to get to appointments about which I am not entirely confident. Considering canceling my dental insurance, despite my myriad issues in that department, to make up at least some of the difference.

Ok, hot tears are starting to burn in my eyes and there isn’t much more to say anyway, so I’m going to end this here, with a perfect Frida Kahlo quote that was brought to my attention by a really swell human being (in no way is my body as broken as Frida’s was through her life, I can’t even imagine her pain, but this thought and her determination is powerful) :

“I must fight with all of my strength so that the little positive things that my health allows me to do might be pointed toward helping the revolution. The only real reason for living.” Frida Kahlo.

Today was good and bad. Got some things done, jumped through some bureaucratic hoops, was ignored by my Dr’s office from open to close. Called at 9:15am the first time, called again the afternoon and again 2 hours later. No help. Last person I spoke to was downright rude to me, despite the fact that I’m in pretty serious pain and out of meds with an appointment on Wednesday with a spinal specialist. You know, if I can make it there. So no big deal, I guess.

Ok, so I missed a couple days in there. In my defense, my back was not great this weekend and also I got to spend some much needed time with Aaron. So, sorry not sorry.

I did, however, happen to take pictures both of those days with the intent of posting them, so, the way I see it, better late than never.

Saturday night epsom salt vibes

Sunday morning sleepy kitties and holiday card crafting

Today, so far, I have called in some refills for pain medication, called and ordered a disk of my images and reports from Doshi Imaging, and confirmed my Wednesday appointment with the spinal surgeon. I was referred originally to a doctor who works with geriatrics, so they scheduled me instead with a Dr. Paulino. Part of me wonders if Dr. Jones didn’t refer me to the geriatrics doctor because of the advanced state of my herniated disks, but maybe I’m just over thinking.

I should be hearing from Ardent Durable Medical Supply today to deliver and fit me with my back brace. That’ll make a cute selfie, no?

One week in to this little project and how different today looks than Selfie 1.

I mean, I look the same, but the circumstances have been turned on their ear.

I have a degenerative disk disease and spinal arthritis. What now?

I need to find a way to make money. I need to find a job that won’t kill me, throw out my back. Problem is, I’ve worked several different types of jobs over the past few years and all of them have thrown my back out at one point or another. Sitting for too long hurts, standing is out of the question for more than 5 minutes at a time. All of the doctors and internet people say that one of the worst things you can do for problems like this is “rest too much.” But no one seems to have answers for those of us who are already to the point where we can’t get around. They also say “Don’t do anything that causes you pain.” Ok, so I’m supposed to exercise, but not do anything that causes pain. I mean, what if everything hurts? All the time? Then what do I do?

So, I’ve been kind of just doing what I’ve been doing. Lots of couch time with lots of pillows to bolster anything that feels weak. Get up often (carefully) and do something, anything. Make the bed (slowly,) do the dishes, feed the cats, light a candle, clean the cat box. Every move must be calculated and with intention. From going to the bathroom to getting a glass of water to sitting back down again.

I put together a little Amazon wish list full of things that would make life stuck at home slightly more comfortable, kind of as therapy, half hoping someone might want to help out and send a little sugar. Things are really tight. Aaron and I sometimes struggle to afford food, these days, with my being unable to work the last 6 months. There is no savings, there are no credit cards. There is only debt and cash. I’m so lucky to be on ACA Medicaid, otherwise I’d probably die. Literally. Actually die. Either from this disorder or from killing myself. If I didn’t have this help I have now I don’t know how I could possibly do anything. I would wind up a complete invalid.